Monday, September 22, 2014

Sister School

I watched out my kitchen window today as Hannah scampered up the branches of our magnolia tree. She shimmied out to the end of a branch that hung five feet off the ground, then shimmied back and gestured for Emma to do the same. Emma nervously, clumsily, made her way up to the branch. She stood on it shaking, clinging to another branch. She peered down at the ground as if it swirled below her, and then she looked back to Hannah, who was taunting her now.

Emma narrowed her eyes and slid one foot along the branch below her, never loosening her grip on the branch above. She made that one step, then changed her mind and slowly climbed down from the tree. I didn't hear what Hannah was taunting because I was on my way out the door, livid.

I found Emma sitting on the back step, with her head in her hands, hiding the tears. Hannah's mouth was still dribbling with something about Emma not being a daredevil, when I yanked her inside and slammed the door.

"What is wrong with you, Hannah?!"I laid into her. "You know Emma doesn't have the same balance as you! She doesn't have the same coordination. She doesn't have the same eyesight. You know that, and instead of encouraging her, you are making her feel ashamed that she isn't like you."

Hannah's eyes welled up with tears. "I forgot," she whispered, "I just wanted someone to play with me."

I turned away from Hannah then, back to the window, and there I stood silently watching as Emma made her way back into the tree. She had steel determination on her face this time. I wanted to save her, wanted to tell her she didn't have to be like Hannah, but then she slowly slid her way several feet farther on the branch...and smiled.

I realized then, something my subconscious had known for awhile, that so much of Emma's abilities are due to Hannah's constant prodding and coaching. Hannah has, in effect, been Emma's physical and occupational therapist. She has not always been the kindest or the most gracious in her efforts to coax Emma along, but Hannah's need for a playmate and Emma's desire to keep up with her sister has created a remarkably effective program of intensive therapy for Emma.

Every day Hannah pushes Emma's abilities and nearly every day Emma's eyes fill up with tears. Had it been up to me I would have consoled Emma long ago and set her on the couch where she was safe and comfortable. I know I would have. I don't want to see her struggle. Yet the most amazing thing happens in Emma nearly every day: she doesn't choose the couch. She climbs back up on the tree and tries again.

Hannah has been coaching Emma on increasing her endurance--pushing her to run faster and farther during recess, timing her and cheering her on, and chastising her when she gives up. And do you know what has happened this summer? Emma's endurance has increased--remarkably so.

Hannah has set up obstacle courses and made up games where they time each other running over and around obstacles. I want to yell that that's totally unfair for Emma: she doesn't have the same eyesight! But do you know what has happened? Emma's agility has improved--remarkably so.

This fall, I wanted to tell Emma's soccer coach about her genetic syndrome, so he would understand why she was clumsier and slower than the other kids, but I held off. And I have been put to shame. Do you know what has happened this soccer season? This:

And this:

And this:

To my amazement, Emma is one of the better players on her team. There is no genetic explanation for that. The best explanation I can come up with is this:

And maybe some of this:

(Never mind that you're terrified right now, Emma, you're going to like this.)

And this:

(See? You're having fun!)

Today I turned back from the kitchen window to a heartbroken Hannah and told her, "Emma's up in the tree again. Go tell her what a good job she's doing. She needs to hear you tell her that she's doing a good job."

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About My Children

Naomi is twelve years old and is living with Bardet-Biedl Syndrome, a rare genetic disorder that can cause kidney failure, obesity, retinal degeneration, and various other symptoms. She also lives with Celiac Disease and multiple dietary sensitivities. Hannah is ten and lives with Celiac Disease and food allergies. Emma is eight and lives with BBS like her big sister Naomi. For Emma, BBS has also caused severe speech apraxia. Toby is seven and lives with one functional kidney. Elijah is four and is completely healthy. They are active, whimsical, and too funny to keep to myself.